Menu

chronic disease

Day 2 of Dblog Week 2015 is about those things that we keep to ourselves, and don’t necessarily like to talk about out in the open. Many of us share lots of aspects of our diabetes lives online for the world to see. Today we get to discuss some of the aspects of diabetes that we choose to keep private from the internet, family, and even friends. Why is it important to keep things to ourselves?

Recently I was asked to complete a survey on employee demographics. You know, the basic questions that it doesn’t take anything more than looking in a mirror to answer. Male, caucasian, brown hair, eyes that change color, glasses when I remember where I put them, no piercings (just holes where they used to be), tattooed, sneakers > dress shoes, untucked > tucked, tie over top button, and plaid if there is ever a choice.

Okay, so maybe they didn’t ask all of the questions that would lead to those answers, but for an employee demographic survey, it didn’t take long to get real personal. One of the sections asked me to voluntarily self-identify any disabilities that I have. I’m thinking, “Okay, so they want to know if I’m physically disabled, if I need accommodations to get to and fro, or something like that.” As I read through the list, I began to feel like it was less and less voluntary, and more and more accusatory.

I will be the first to say that I’m biased when it comes to surveys like this. Whether they are at work, at the doctor’s office, or as part of a contest to win a lifetime supply of alcohol swabs and cotton balls, these questions feel loaded, and require a person to think about themselves in a very particular way in order to answer them effectively. And for the life of me, I have a really hard time thinking of myself as “disabled” because of my diabetes.

I imagine many people with diabetes and other conditions on this list feel the same way. It is extremely difficult to think of ourselves as disabled, or that we might need special accommodations because we have to live with something outside of our control. The fact is, even without any of these things, any one of us could need special accommodations at any given point in time. But does that make us “disabled” because we are strong enough to admit that we might sometimes need help?

Diabetes as a disability is not something I like to think about. I don’t want to talk about it. I don’t even want to imagine it. Even if, in reality, diabetes or complications thereof may become a disability for me, it is not something that I am willing to give more than just a brief moment of panicked thought about.

Diabetes is challenging, but so is PTSD, depression, MS, epilepsy, cancer, and every other alleged disability on this survey. Yet, having any of these conditions does not make us disabled. As much as a disability is a physical challenge, it is also an allowance that a chronic condition is strong enough to limit us from doing the things that we accept that we are capable of doing.

For now, for this survey, I don’t wish to answer. None of the items on this survey, regardless of how many I may have personally, are anything that I am willing to accept as a disability. That does not mean that I may not need special accommodations from time to time, but that simply means that I’m human, not that I’m disabled. We all need help and special accommodations sometimes, and we shouldn’t be labeled negatively because of those needs.

I’ve always wanted my own library. I wanted to be a permanent resident in a place of knowledge, where dreams are created and nurtured, where there is a near-guaranteed payoff for time well spent, where I could inspire people to imagine possibilities and achieve the unexpected, and where I could make a positive difference in the lives of others.

After several years of leading a creative project management and development team, I moved to south Florida in 2004 chasing love and the dream of becoming a library success story. It wasn’t long before I developed aspirations of finding my way to the top, where I could lead and inspire others to dream even bigger than I could on my own. After some hard years of clawing my way up the corporate ladder, and learning and losing more than I had bargained for both professionally and personally in the process, I relocated again in 2009 to venture into the unknown territory of the accidental medical librarian.

The past five years have had both ups and downs, but these years have ultimately been rewarding, and have provided me plenty of opportunities to grow personally and professionally. I am proud of the things that I have accomplished as a medical librarian, as a diabetes advocate, and that I have had the opportunity to play a role in inspiring the people around me to achieve. In our medical library, we are a team, and our success is as dependent on each other as it is on ourselves and our individual accomplishments. And we’re only just getting started.

I am so excited to share the news that, as of today, I am the Director of the Charlotte Edwards Maguire Medical Library at the Florida State University.

I have worked extremely hard to get to this place and to tie all of my little worlds together into one big dream where my passions can coexist. I’ve had some great support. And Amanda has had the patience of Job. So I’m going to take a few moments to enjoy this accomplishment.

And then I’m going to change the world.

Friday, 5/23/2014

I am pleased to inform you that after a national search, Martin Wood has been named Director of the Charlotte Edwards Maguire Medical Library at the FSU College of Medicine, and promoted to Associate Librarian.

Martin graduated from Florida State University, twice, where he acquired a Bachelor of Science degree in Mass Communication, and a degree as Master of Library and Information Studies. He is also a graduate of the Harvard Leadership Institute for Academic Librarians.

After years of experience with the Florida Center for Prevention Research and in the Global Research Library for Franklin Templeton Investments, a Fortune 500 company, Martin brought his skills in technology, business, communications, education, and research to the Maguire Medical Library. Martin started at the College of Medicine in 2009 as the Head of Electronic Resources and Technical Services, and shifted the library’s definition of “collection” to focus on those electronic resources with the greatest potential for positive impact on patients at the point of care. He was promoted to Assistant Director of the medical library in 2012, and then Interim Director in March of 2014, overseeing electronic resources, collection development, scholarly communications and open access publishing, systems, web services, and public services.

Complimenting his leadership of the Maguire Medical Library team, Martin was elected and served as the President of the Florida Health Sciences Library Association in 2012-13, and has been the Chair of both the Strategic Planning and Nominating Committees in FHSLA. Martin is a Senior member of the Academy of Health Information Professionals (AHIP) with the Medical Library Association (MLA), and also represents Florida State University as a member of the Florida Collaboration of Academic Libraries of Medicine (FCALM), the Southern Chapter of the Medical Library Association (SC/MLA), the Consortium of Southern Biomedical Libraries (CONBLS), and the Association of Academic Health Sciences Libraries (AAHSL).

In addition to his accomplishments in the medical library field, Martin is also a leader and outspoken advocate for people living with diabetes, and serves at the local, state, national, and international levels to improve the lives of people with chronic conditions. Martin is a well-known blogger and patient advocate in the diabetes community, and was recently appointed to the JDRF International Type 1 Diabetes Voices Council in Washington, DC. He is also a faculty advisor for the Students With Diabetes organization, which aims to create a community and connection point for young adults with diabetes on both college campuses and in local communities across the country.

I want to thank the members of the search committee for their due diligence in reviewing a number of qualified applicants, and confirming for us the real jewel we have at the College of Medicine. Please join me in congratulating Martin, and thanking him for his leadership as he continues to direct the medical library team and oversee the services and resources that have made the Maguire Medical Library the model academic digital medical library for the 21st century.

Open Enrollment is that magical time of year when you have a brief window of opportunity to make decisions about your retirement, savings, life insurance, health insurance, and whether or not you want to join the local granola grocery co-operative via payroll deduction. Okay, so maybe some parts of Open Enrollment are more important than others.

At my work, we have a health and wellness fair during Open Enrollment where all employees can show up and visit vendors, talk to various company representatives, have their blood pressure checked, get flu shots, and participate in testicular cancer screenings. It’s usually a complete madhouse, with way too many people, so I tend to avoid it if at all possible. This year, however, I went so that I could get some information on my health insurance options, and make the rounds taking advantage of free information and basic health services.

Wait…what do you mean nobody was supposed to be performing testicular cancer screenings? Dangit! Fooled again!

At the end of the week, I was clicking around doing research and exploring my options for 2014, and I stumbled across some panicked discussions of changes to prescription drug coverage. As I lurked, and got caught up on what was going on, I realized that the prescription drug insurance company that folks were talking about was the same as the one that I use to get those things that I can’t live without, like insulin and BG strips.

Word has been getting around that Express Scripts is changing their coverage, or preferred coverage, or well, really it just depends on how you look at it and what your contract with Express Scripts says. But don’t take my word for it. The CMO of Express Scripts lays it out pretty clearly: It’s all about money. Shocker, right? (That’s sarcasm.)

For me and my diabetes, my biggest concern had to do with the coverage of Novolog shifting over to a questionable category in the Express Scripts 2014 Forumlary (PDF) called “Excluded Medications.” What does that even mean? Does it mean that Novolog is no longer covered at all? Because that is what I think when I see the word “excluded.”

Well, despite being on a list of “Excluded Medications,” I was able to confirm with my HR representatives and pharmaceutical reps that “excluded” really means that those drugs and products are no longer “preferred” medications, but are still covered as non-preferred medications, which means they fall under a higher copay, as well as possibly requiring the patient to pay the difference between the non-preferred brand name medication and the preferred alternative. As an alternative to Novolog and Apidra, Express Scripts is suggesting Humalog. When I talked to a physician friend of mine and he mentioned a recent visit by a Lilly rep (who manufactures Humalog) to his office, the word he used to describe the Lilly rep’s reaction to the Express Scripts formulary changes was “jubilation.”

But don’t worry folks, Viagra is still covered and preferred.

The shared reasoning behind so many drugs moving over to the non-preferred list at Express Scripts is because they do not believe that many newer, more expensive, more recently researched medications are as effective as their cheaper counterparts. They feel that patients already have enough options. Besides, patients are all the same, right? I mean, if you have diabetes, and I have diabetes, then we’re basically twins. Right? No.

I know what I need for my diabetes. My immediate healthcare team knows what I need for my diabetes. My A1C says that what I’m doing is working pretty well. This is MY diabetes. There are many sort of like it, but this one is MINE. Pharmacies and prescription drug insurance companies focus on how much I cost, and how much money they stand to make or lose from me, which is the biggest decider in the level of service that they provide. That is business, and as someone with a chronic condition who needs prescriptions on an ongoing basis, I’m not worth as much to them as a person who pays a monthly premium but never uses prescription benefits. To hedge their losses, they move prescriptions that are actually working better over to a non-preferred status so that they don’t have to lose as much money filling orders that are more expensive. To be honest, I’d probably do the same if it were my finances. The difference is that my personal financial savings decisions don’t usually require other people to make decisions about how they are going to live and survive. < /rant >

In some situations, where your physician feels that you need the brand name medication that is on the non-preferred list, there is a solution that may help. I was advised by my benefits group of the following:

If you request a preferred brand-name drug when a generic is available, you must pay the difference between the generic cost and the preferred brand-name cost, plus the appropriate copayment or coinsurance. If your physician writes on the prescription that the preferred brand-name drug is medically necessary or“dispense as written”and the reason, you pay only the appropriate copayment or coinsurance.

Maybe none of this information is helpful to you. Maybe you are covered at 100% and don’t have to worry about copays, preferred and non-preferred medications, or notes from your doctors that include the words “medically necessary.” Or maybe you’re wondering how you’re going to be able to afford insulin in 2014, along with BG strips, pump supplies, glucagon, doctor appointments, and other diabetes randomness. Whatever the case, DON’T PANIC. In most cases, you still have time to get an appointment with your healthcare team to talk about your needs and build a plan for what is next. With insurance, prescriptions, and even diabetes advancements, the only thing that is constant is change. Diabetes is a different beast every day, and we adapt to it constantly. This too, we will adapt to.

Today there is cause for people with type 1 diabetes and other pre-existing conditions to celebrate. The Supreme Court ruling confirms that people with diabetes (PWDs) will retain protection from insurance discrimination, and parents can rest easier knowing that their children with diabetes will be covered for life-saving diabetes supplies until at least age 26, when they can get their own insurance without fear of being denied because they are insulin-dependent. Sure, the Affordable Care Act isn’t perfect, but it’s one step closer to not having to fear how we are going to get that next vial of insulin, test strips, and other necessities to stay alive. We can rest assured that diabetes won’t prevent us from getting health care, because diabetes is a big reason we, people with diabetes, need health care to begin with.

National Health Blog Post Month, Day 10: The future of online activism. Our favorite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community – how will they evolve, improve, and grow?

The Diabetes Online Community (DOC) is growing. People with diabetes (PWD’s) are discovering that there are other people out there in the world and on the internet just like them, who know what they are going through, and who deal with the same things day in and day out.

According to the World Health Organization, in August of 2011 there were 346 million people worldwide who have diabetes. Most of those 346 million people have never even heard of a diabetes community, much less a community that is online, worldwide, and accessible at any time, day or night.

Last week there were 111 people involved in the weekly Diabetes Social Media Advocacy (#DSMA) Twitter chat. That is 111 people who either have diabetes or who live with and love someone who does. For every one of them there are millions more who are living with diabetes alone, with no support, no encouragement, and nobody to turn to who truly understands the daily pricking, poking, counting, injecting, and correcting adventure that is life with diabetes.

The point is that we, as a diabetes community, have a lot of room to grow. So far we’ve really grown organically, and often accidentally. Someone may be searching for something about diabetes and spot a link to a diabetes blog. From that blog they may find references to other blogs, different types of information, and maybe even reach out to an online community with questions.

Healthcare professionals need to better recognize that patient advocacy and support is not going to go away, and that it is not a bad thing, and encourage patients to get more involved with the online communities that are there for them. From those that I’ve talked to, the overwhelming majority of doctors do not like their patients getting information online relating to their health condition. Most doctors would prefer that a patient contact them directly for support. Meanwhile, these same doctors go to great lengths to remain incommunicado, often having an unlisted personal phone number, not sharing their email address, staying off of Facebook, and forwarding patient calls to voicemail instead of a real live human being after hours.

If you, as a doctor, expect your patients to look to you to be their primary contact for questions, then you must be available 24/7 just like the online communities are. Otherwise, change your expectations, because patients are not going to stop looking for the information and support that they need to live with their chronic condition.

I realize that doctors are cautious about patients contacting other people who do not know their medical history and asking clinical questions. It’s a valid concern, but it doesn’t cover the whole picture of what it is like sharing a world 24/7 with diabetes.

The Diabetes Online Community is about LIVING with diabetes. Our doctors and healthcare professionals play a critical role in our living with diabetes, but they are supporting cast. We, the people WITH diabetes, are the stars of the show. Doctors need to make sure that the patient views them as part of the solution, a partner, not some overbearing dictator of their health.

Diabetes is a chronic illness that requires people to manage almost all aspects of their disease independent of a physician’s watchful eye. We look to our endocrinologist, CDE, or primary care physician for overall guidance, but ultimately we are the ones taking action on all of the diabetes decisions we have to make on a daily basis. Nobody calls their doctor every single time they need to inject insulin. We educate, we calculate, and we dose accordingly.

The diabetes online community also provides something else that most doctors simply can’t, and that is time for the emotional side of the disease. We take time to get to know each other, and bond. Diabetes is an incredibly emotional disease, and the online community is more capable of providing support and encouragement and understanding at the point of need than any doctor’s office can, because those in the community deal with the same emotional triggers day in and day out.

If there is anything that I have learned about diabetes in my 30+ years with it, it is this: The only diabetes quick fix is glucose when you’re low. Everything else takes time, patience, and deliberate action to make it better. Having a community of people available who understands is the difference between thriving with diabetes and simply surviving with it.

Photo by C.

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

Lately, I’ve been zig-zagging all over the place. One such zig-zag took me to the 1-year anniversary celebration of Bringing Science Home, a joint effort between USF Health and The Patterson Foundation that aims to revolutionize what it means to live well with chronic disease and invisible illness.

Bringing Science Home’s Mission Statement
“To empower people touched by chronic disease to live optimistically and to create a new model for chronic disease education.”

I get to sit through a lot of health and medical presentations, and I get exposed to all sorts of ideas about how to treat patients, and the roles that health professionals play in educating people with chronic illnesses. Sometimes I am moved by what I hear so much that I have to fight the urge to stand up in a chair and applaud; other times I am moved in the opposite direction, and I have to fight the urge to jump up and interrupt the folks who are doing the talking and dole out a bit of education myself.

I can really get behind what Bringing Science Home is doing. Finally, there is a group that is getting organized and making efforts to bridge the gaps in areas of life with chronic illness that our current systems too often neglect.

Imagine you are a young adult in today’s world. You have just graduated high school, and are off to college to pursue the dreams of higher education. The world is your oyster! You get to set your own class schedule now, pursue your own interests, meet new people, join clubs and organizations, go to parties, stay up all night cramming for that big test you have tomorrow, maybe find a job, meet someone that fancies you and start a relationship. The sky is the limit!

If you have diabetes, you also have to make sure that you are doing what you need to do on that front as well, so that you are able to have all of the adventures of a college education. Before, when you were at home, it might have been easier. Your parents may have taken care of making sure you have insulin, diabetes supplies, test strips, and regular visits to your diabetes doctor, eye doctor, dentist, etc. They also probably helped a lot with making sure that you had the proper foods to eat, and that there was always a juice box or something nearby to treat a low blood sugar. Life in college is different: It’s all on you now.

Add those two together, and it is A LOT for a young adult to have to deal with. Keeping up with all of the diabetes stuff, plus all of the college stuff, it’s no wonder that most people with diabetes in college find that their control starts to slip. Enter Students With Diabetes, a group of people whose aim is to create a community and connection point for students with diabetes on college campuses. That’s right, “campuses.” Plural. This is not an initiative restricted to just the University of South Florida where Bringing Science Home lives. At publication of this blog post, Students With Diabetes is on 28 college campuses across the nation, and growing!

How amazing to be able to meet other people, with diabetes, who are going through this incredible transition and learning experience, and not feel like we have to hide our condition! Typically, we learn to hide and suppress our own needs so that we better fit in, whether we’re in college or just in normal day-to-day life. Being shown through our interactions with others that we don’t HAVE to hide is really what living well with diabetes is all about.

Bringing Science Home is heavily focused on life with diabetes, but it is even more about helping people of all ages and with all chronic illnesses get the help and support that they need to thrive. Whether you are Students With Asthma, Students With Diabetes, or at another life stage or have another chronic illness that doesn’t get the support it deserves, I am so very encourage by what Bringing Science Home is doing, and am confident that efforts like this are the future of living well.